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Tuesday, February 28, 2012



    The determination of whether someone is competent to make their own decisions is very difficult. Over the last 20 years numerous experts have taken their best shots at designing algorithms or questionnaires to help primary care physicians to make this determination with relatively little success. In this article I am sharing the result of a recent study of the different instruments that have been developed for this.(1) The instrument that has been the best tested and validated is called the "Aid to Capacity Evaluation." A copy of this form is available as a free PDF file online and includes instructions for use.
     My reason for including this information in a consumer blog is because it is often too late to be practical if the family waits for a physician to do the evaluation. These kinds of decisions are best anticipated. Most relatives and friends of someone whose health is deteriorating to the point of being unable to make a quality decision for themselves are aware that in some areas of life the patient should not be left on his/her own. Reviewing this form allows family members to walk through the steps to assess the different areas of capacity/competence. Once family members get to the point of thinking this may be helpful, it is time to formally prepare a document expressing the patient's wishes for end-of-life care or other critical health decisions. Ideally, this can be done before the patient becomes incompetent across the board.
     The legal background for this issue is that all adult patients (over the age of 18) are presumed by law to be competent. Even if a patient has severe chronic disease, even chronic mental illness like schizophrenia, the initial legal presumption is that they are capable of making their own decisions. In general, psychiatric patients cannot be compelled to take their medications. Psychiatric patients are presumed capable of determining whether they want a surgical procedure or not, even if a "reasonable" person of the same age would reach a different conclusion. They are not required to make the "correct" decision (whatever that is). The decision just needs to reflect a minimal understanding of the problem or issue, a clear and consistent preference (whether logical or not), and not be obviously impaired by other illness, particularly depression or delusions. A person with a chronic mental illness such as schizophrenia or dementia can be quite capable of expressing a meaningful decision about a surgical treatment or diagnostic test even when they care clearly incompetent to manage their own finances, hygiene, or usual activities of daily living. So to say a person has dementia, by itself, has no specific implications for their capacity to make medical decisions.
     An individual can be deprived of their right to make their own decisions only by an authorized police official (e.g., for a 5150 Psychiatric hold for 72 hours to perform a formal evaluation of competence and safety) or judicial determination (a competency or custodianship hearing). The police action is only a temporary one. The judicial action obviously requires significant time to go through the steps of finding an advocate, reviewing relevant documents and witnesses, and scheduling a formal hearing on the court docket. As a practical matter, the legal system is simply not capable of responding quickly enough to assist in making decisions about an individual's competency to be helpful when it is needed. That is why it is so important that family members or anyone who takes part in the care or support of a patient proactively address these issues well in advance of acute illness or the need for something like nursing home placement when the patient says s/he does not want to go.
     I believe that the form below is very simple and clear to follow. A lay person can walk through the appropriate evaluation process for someone s/he is concerned about. It is so much better to have this process addressed early in the course of chronic illness, even by a lay person, than it is to wait until the situation is urgent and then try to have a doctor do it. Legally a doctor cannot make the determination that someone is not competent to make a decision. If an advance directive is not in place, then the legal process will have to be invoked.


[Record observations that support your score in each domain, including exact responses of the patient.  
Indicate your score for each domain with a circle.]

1. Able to understand medical problem 
      (Sample questions: What problem are you having now? What problem is                
        bothering you most? Why are you in the hospital? Do you have (name

             YES                   NO                UNSURE
        Observations:  ______________________________________________  

2.  Able to understand proposed treatment 
     (Sample questions:  What is the treatment for [your problem]?
       What else can we do to help you? Can you have [proposed treatment]?

             YES                   NO                UNSURE
       Observations: ______________________________________________

3.  Able to understand alternative to proposed treatment (if any)
     (Sample questions: Are there any other [treatments]? What other
       options do you have? Can you have [alternative treatment]?

             YES                   NO                UNSURE                 UNDISCLOSED

       Observations: ______________________________________________

4. Able to understand option of refusing proposed treatment 
      (including withholding or withdrawing proposed treatment)
       (Sample questions: Can you refuse [proposed treatment]? Can we stop
        [proposed treatment]?

             YES                   NO                UNSURE

        Observations:  _____________________________________________

5. Able to appreciate reasonably foreseeable consequences of
     accepting proposed treatment
(Sample questions: What could happen to you if you have [proposed
 treatment]? Can [proposed treatment] cause problems/side effects?
 Can [proposed treatment] help you live longer? )

             YES                   NO                UNSURE

       Observations:  _____________________________________________

6.   Able to appreciate reasonable foreseeable consequences of 
        refusing proposed treatment (including withholding or 
        withdrawing proposed treatment) 
        (Sample questions: What could happen to you if you don't have [proposed
        treatment]? Could you get sicker/die if you don't have [proposed treatment]?
        What could happen if you have [alternative treatment]? (If alternatives are available)

             YES                   NO                UNSURE

       Observations:  _____________________________________________

(Note: for questions 7a and 7b, a “yes” answer means the person’s decision is affected by depression.)

7a. The person's decision is affected by depression
       (Sample questions: Can you help me understand why you've decided to
        accept/refuse treatment? Do you feel that you're being punished?  Do
        you think you're a bad person? Do you have any hope for the future?
       Do you deserve to be treated? )

             YES                   NO                UNSURE

      Observations:  _____________________________________________

7b. The person's decision is affected by psychosis
       (Sample questions: Can you help me understand why you've decided to
        accept/refuse treatment? Do you think anyone is trying to hurt/harm
        you? Do you trust your doctor/nurse? )
             YES                   NO                UNSURE

       Observations:  _____________________________________________

Overall Impression 

Definitely capable     Probably capable     Probably incapable     Definitely incapable 

(for example: need for psychiatric assessment, further disclosure and discussion with patient
or consultation with family)

The initial ACE assessment is the first step in the capacity assessment process.  If the ACE is definitely or probably incapable, considerable treatable or reversible causes of incapacity.  Repeat the capacity assessment once these factors have been addressed.  If the ACE result is probably incapable or probably
capable, then take further steps to clarify the situation.  For example, if you are unsure about the person’s ability to understand the proposed treatment, then a further interview which specifically focuses on this area would be helpful.  Similarly, consultation with family, cultural and religious figure and/or psychiatrist,
may clarify some areas of uncertainty.

Never base a finding of incapacity solely on your interpretation of domain 7a and 7b.  Even if you are sure that the decision is based on a delusion or depression, we suggest that you always get an independent

Time taken to administer ACE:   ______ minutes
Date:  ______________
Assessor: _______________________________

COMMENT: You will notice that the form records its conclusion in a "fuzzy" way--"probably" vs. "definitely" capable or incapable. This is as good as it gets. If you need to seek more clarity, you seek more input (additional evaluations using the same instrument from other people who know the patient well or other professionals with special expertise in these kinds of assessments. Just remember that no expert is qualified, on his own, to make a determination that a patient is not competent to make a medical decision. In the end, only a court can do this if the patient has not previously appointed a "health care proxy" to make these decisions when s/he should become no longer able.


1. Sessums LL, Zembrzuska H, Jacksoni JL. Does this patient have medical decision-making capacity? JAMA 2011; Jul 27; 306(4): 420-7.


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